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Living with Unpredictability: Part 1

Living with COVID-19 has brought about significant changes for everyone, and they keep coming. Kate and I are no exception; however, I am especially mindful that Kate’s Alzheimer’s is also undergoing changes that have upset the very nice routine we have had for years. I’m a person who likes consistency but “Living with Alzheimer’s” means increasing unpredictability. Her sleeping “pattern” is a good example.

Before Kate’s diagnosis, we tended to follow a regular schedule each day of the week although it changed periodically with other changes in our lives. That has been true true since the diagnosis as well.

Until about two years ago, her daily schedule meshed rather well with mine. I got up around 6:00. That gave me time to have breakfast, take my morning walk, and take care of email and household chores. She got up between 8:00 and 9:30. That is when we started going to Panera almost every morning and the café in Barnes & Noble in the afternoon. Add eating out for lunch and dinner, and we had a full day. Then we enjoyed a little time for relaxation at home before going to bed.

The first big change came about when she started sleeping later in the morning. We began to skip Panera and go straight to lunch. At the same time, she started resting shortly, sometimes immediately, after returning home from lunch. The consequence was that we also stopped going to Barnes & Noble in the afternoon. We still ate out for dinner, so our schedule continued to maintain a significant amount of stimulation for both of us. In addition, when she wasn’t resting at home, she worked jigsaw puzzles on her iPad. That kept her occupied and her brain focused on a pleasurable task.

We began to move away from this routine early this year when she twice remained in bed until well past lunch. The pandemic brought about more change. Eating out came to an abrupt halt, and Kate lost the ability to work her puzzles on the iPad. The result was a drastic reduction in outside stimulation. It has been especially tough for Kate. That, in turn, has required more of my time to keep her entertained. Despite my efforts, our lives have become more sedentary.

Kate adjusted by resting more than she did previously. That may be what is behind the variability in the time she awakes in the morning. Of course, it is also possible that it relates more directly to changes in the brain as a outgrowth of Alzheimer’s.

At first, I suspected that her staying in bed so long related to fear or anxiety related to her confusion upon waking or to frightful delusions. On at least two occasions, I have said, “You look frightened. Are you?” In those instances, she said she was but didn’t know the cause.

More recently, she hasn’t appeared to be frightened, simply tired. That was true two times last week. The first time I was successful in getting her up. The second time, I was not, at least until after 1:30. I first tried to wake her at 11:00. She woke up and seemed in good humor; however, when I suggested that she get up for lunch, she balked. I let her rest another twenty minutes and tried again. Still no luck. I tried two other times and finally gave up.

I had planned for us to go out for lunch but shifted gears and had lunch delivered to the house. At 1:30, I tried again, this time with success. The only problem I had was that she didn’t recognize me as her husband. Usually that doesn’t make a difference. This time she wasn’t as comfortable with my help in the bathroom or in helping her dress. She ate her lunch. Then she had a hair appointment.

As in the past, she sometimes gets up early. Last Friday, that was 6:25. This occurs frequently enough that I am keeping more breakfast food for her. Although her early starts interrupt my daily routine, I adjust easily to that. I enjoy the time with her. In addition, I know she will want to rest before lunch. That gives me a chance to take my morning walk. Not only that, but she normally wakes in time for us to have lunch on those days we have a sitter.

What is next? I’m not sure. Although the unpredictability of her getting up represents a significant change in our life style, it is far from being a serious problem. I know we will have bigger adjustments in the future. I expect that she may eventually sleep for extended periods during the day. I don’t look forward to that. I would rather live with the current unpredictability.

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Sundowning?

One of the common symptoms associated with Alzheimer’s and other dementias is sundowning or sundowner’s syndrome. Until this week, I haven’t noticed this with Kate. The classic signs usually involve confusion and anxiety that occurs around sunset or early evening. She’s experienced a lot of confusion and some anxiety, but it has not been typically associated with the evening. In fact, afternoons and evenings have been the most predictably good parts of her day.

Kate’s behavior the past two nights leads me to suspect sundowning might be entering our lives. Thursday she was awake earlier than usual, around 8:30 as I recall. We had enough time for her to have breakfast and rest an hour or so before going for lunch around 11:30.

The balance of the day went well. She rested some, and we looked through one of her photo books. We had an early and pleasant dinner at Casa Bella. The pleasantry evaporated when we pulled into the garage at home. When I opened her door, she looked frightened and refused to get out of the car. She told me to get in.

I complied, and we chatted for a few minutes. She thought there were people in our house and wanted to avoid seeing them. I mentioned that it was our house, and we hadn’t invited anyone. We chatted a few minutes. Then she said, “Well, what do you want to do?” I said, “I think we should go inside and get ready for bed.” She said, “Okay,” and we went inside.

Everything was fine until near the time that I got in bed. She was frightened again and mentioned something about “them.” That is not unique. She frequently believes there are others in the house or on the way. I went in another direction and said, “Why don’t I come to bed now. I’d like to read something to you.” I got The Velveteen Rabbit and hopped into bed with her.

I’ve been reading the book to her for several months now, and she has never given me any sign that she recognizes it or has ever read it before. Her immediate response varies. Sometimes she is reluctant to go along with my suggestion that we read it. Other times, she seems to like the idea. In those cases, I get the feeling she just wants the comfort of our engaging in an activity together. That’s the way it was that night.

She didn’t make her normal audible responses to specific passages that catch her attention, but she did begin to relax. By the time we reached the end of the book, she was at ease. I thanked her for letting me read to her and told her I loved her. She said, “Me, too.” I turned out the light, and we were off to sleep.

Yesterday, she was wide awake when I got out of bed. She said wanted to get up. I suggested that she let me get up first and dress and then help her. She agreed. I thought she would be asleep by that time, but she surprised me. I got her up at 6:50, and fixed her breakfast. We had a good time. She was talkative and always enjoys her cheese toast. When she finished, she wanted more and enjoyed it just as much.

After breakfast, we went to the family room and looked at one of her family photo books until she wanted to rest. That was about 9:00. I had a Zoom meeting with my Men’s Coffee Club at 9:30. We were through at 11:00. I thought that would give us plenty of time to have lunch before I had another Zoom meeting with a United Way committee.

That idea went by the wayside when I discovered that Kate had gotten up from her rest just before I finished with my men’s group. She was looking around the house. When I mentioned lunch, she wasn’t interested. I decided to have lunch delivered. Before it arrived, she was resting again. Time was also running close to my noon meeting. I decided to eat after the meeting.

That turned out to be a good idea. Kate was ready to eat when the meeting ended. We were about to sit down when Mary, our Friday sitter, arrived. She had picked up a lunch for herself, and the three of us ate together. I have found that my departure is much smoother when I don’t have to leave immediately after the sitter gets here. That worked especially well yesterday. Kate was talkative, but it was difficult to understand what she was saying. When I returned, they were having a good time looking at one of Kate’s photo books. Mary said they had talked and looked at books the whole time I was gone.

We picked up a takeout meal for dinner. Before leaving, Kate wanted to go home. I told her we could pick up our dinner and take it home to eat. We enjoyed our meal, and I thought we would be off to the bedroom to get ready for the night. Kate had other ideas. She wanted me to take her to her home, not mine. On the way home, she repeated that she wanted me to take her to “her” home. I felt the need to prepare her that it was my home. I told her it was late and that it was best that she stay at my home and that I could take her to her home “in the morning.” She said the clothes she would need that night were at her home. I told her I had clothes for her. She said, “Well, I’d better call my mother.” A moment later, she said, “She’s not going to like this.” I assured her it would be all right. She was hesitant, but she agreed.

Once inside, she was still uneasy, but she let me help her in the bathroom and getting dressed. I put on some music that I thought she would like and helped her into bed. Then I took my shower. When I got out, I think she was asleep. I know that she didn’t say anything until I got in bed. Then it was just a soft chuckle. She sometimes does this to acknowledge that she is awake. On the other hand, it could have been that she was having a dream.

Was this a case of sundowning? I don’t know. She does seem to have had more delusions in the past few days. I have another thought. Following the guidance of Kate’s doctor, I have gradually eliminated her Aricept  (donepezil). She took the last tablet on Tuesday. Is this a symptom of withdrawal? Again, I don’t know. It could be that the experiences of the past two nights are not sundowning or signs of withdrawal. It could also be just another stage in the progression of her Alzheimer’s.

No matter how much a caregiver knows, one never knows it all. But that doesn’t keep us from trying. I think I’ll go back to her Aricept  tonight and follow the same withdrawal schedule we have for the past two weeks.

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Sleep and Rest

Long ago I learned that people with dementia reach a point at which they sleep more. I’ve been mindful that would happen, but I wasn’t prepared for the way that is happening with Kate. I just thought she would simply start going to bed earlier and getting up later.

I’ve not been able to identify a consistent pattern for her. Until two years ago, she went to bed between 8:00 and 9:00 and got up early enough for us to get to Panera for a blueberry muffin between 9:00 and 10:00. In addition, she would rest a while after lunch. That would give us time to spend an hour or more at the café at Barnes & Noble before going to dinner.

When she started sleeping as late as 11:00 or 11:30, we stopped going to Panera. It was time for lunch. Along with that, our afternoons changed. She wanted to rest immediately after lunch. That would last as long as two or three hours which took up most of the afternoon. That put an end to our visits to Barnes & Noble.

This pattern changed with the arrival of COVID-19. Kate was losing her ability to work jigsaw puzzles on her iPad long before then, but she lost it completely after we began sheltering. That was her last self-initiated activity and had a significant impact on her sleep and rest. As recently as a year ago, she could easily spend 6-8 hours a day working her puzzles. That lessened during the day because she was either sleeping or resting, but she continued to work on her iPad for an hour or more each night. That meant she got to bed between 8:00 and 9:00.

Without her puzzles, she had nothing to do after dinner. I tried to interest her in looking at her family photo books, but she really needs someone to identify all the people. That was a time when I would try to catch a little of the evening news and get my shower. The result was her going to bed shortly after dinner. Since we have started eating out some evenings, that means she gets to bed around 7:30 although she is rarely asleep when I get in bed.

Several times a few months ago, she refused to get up when I tried to wake her. Before that, she wasn’t always eager to get up, but she never refused. Since that first time, there have been several other times like that. One day she remained in bed until 5:15 in the afternoon. Then she began to wake up early on a few mornings. I am now used to her getting up early almost once a week, sometimes twice.

Until recently, she has always gotten up rather quickly in the afternoon. The exceptions occurred in the last week or ten days. The first time happened when I wanted her to get up for dinner. After a couple of efforts within 15-20 minutes, I let her rest another hour. Then she got up agreeably.

Thursday afternoon last week we had hair appointments at 3:30. She was resting, not asleep, when the sitter arrived for me to meet a friend for coffee. I returned just a few minutes before we needed to leave. She was still resting. I told her it was time for our hair appointments and fully expected her to get up easily. I was wrong. She was just like she has been in the morning. She was very relaxed but also very firm in saying she wasn’t going. I called the stylist and told her I was having trouble getting Kate up and that I might have to cancel. I gave her another ten minutes and tried again. I could see it was no use and rescheduled our appointments.

I stayed in the family room with her while she rested. An hour later she was ready to get up. She was in a good humor. I feel sure she didn’t even remember that I had tried to get her up earlier. It wasn’t long before we left for dinner at Casa Bella and had a good evening. It was as though nothing had happened at all. We both felt good.

Saturday morning she was up very early. I had just gotten up and walked into the bathroom when I heard her moving. She had gotten out of bed. I helped her to the bathroom and took advantage of the early morning and confusion to give her a shower. When we finished, I helped her dress. She wanted to lie down on the bed. Because it was so early, I was happy to tell her that would be all right. That gave me time to comb my hair, shave, and dress. She remained in bed until time for lunch.

Sunday morning, she was up before 9:00. She was unusually cheerful at breakfast. Afterwards, we spent about forty-five minutes looking at one of her family photo books. It didn’t surprise me when she got tired and rested over an hour before lunch.

She awoke early again this morning, about 7:30. I went to her and found that she seemed wide awake and in a good mood. When I told her it looked like she was ready to get up, she said, “I don’t know.” We talked a few minutes. I told her I would be happy to help her get up and dressed. She said she wanted to rest a little more. It’s my day for Rotary, and I like to have her ready for the sitter who comes at noon. We had plenty of time, so I let her continue to rest. I don’t plan to get her up until 11:00. If she wants to stay in bed, I’ll let the sitter handle it.

The only thing that’s clear is that Kate hasn’t settled into a consistent sleep pattern. I’m not sure whether the present irregularity is something that is long-lasting, or she will gravitate to something else. As Kate herself is prone to say, “We’ll see.”

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A Restaurant Experience The Other Night

Although Kate sometimes speaks harshly to me, it is far from an everyday occurrence. She has remained gentle and kind-hearted. Not only that, but she has rarely said anything in public that someone else might take as rude or inappropriate though on a couple of occasions, she has said something to me that surprised the people we were with. Recently, she spoke harshly to the woman who was shampooing her hair. This wasn’t anything serious. She was just frightened by the splashing water. I don’t think the hair dresser thought a thing about it.

A few nights ago at a restaurant, we had a different kind of experience. We had had a nice day. She had been in a good humor, and we had enjoyed our time together at lunch and at home where we toured the house, looked at some of her photo books, and listened to music. She had been resting when I told her I thought it was time for us to go to dinner. She got up easily and wanted to go to the bathroom. As we were about to leave, she looked like she was troubled though she was quiet in the car.

She was very uneasy walking from the car to the restaurant. This is something that is becoming common. Her vision fools her into thinking the pavement is much more uneven than it is, and she is quite afraid of falling. Once we got to the table nothing seemed right to her. She thought it was taking a long time to get our drinks and place our order though it hadn’t.

She was confused and not especially interested in anything she was served. I tried to find something she would like but wasn’t successful. Our server was someone who has served us a long time, but Kate responded as though she had never met her. She wasn’t rude, but she didn’t express any special pleasure in seeing her. That was a surprise. At one point, she was bothered by something in her teeth. The server asked her about it, and she opened her mouth to show her much the way a small child would do. The server asked me if they were her real teeth. Before I could answer, Kate said she had one tooth that wasn’t hers. I was stunned. It was one she got long before I knew her. We’ve replaced it one time, but that was probably twenty or more years ago. I haven’t heard her say anything about since that time, and I had almost forgotten. How in the world she remembered I’ll never know.

I wish I could remember all of the things that happened. I know it was very clear to the server that she was not the same Kate she had seen before..

Her mood didn’t change as we walked to the car. When I opened the car door for her, I started to take off her mask as I usually do. She was angry and snapped at me. I was surprised. She is always eager to take it off and often does so herself before we get to the car. I apologized. After getting in the car she was fine. She did, however, wear the mask all the way home and didn’t take it off until we were in the house. What brought on the episode at the restaurant and why she changed so quickly once in the car remains a mystery.

I haven’t observed anything like it since then although I have noticed an increase in her uneasiness walking to and from the car. That is especially true when going to a restaurant or to her hair dressers. I am sure the same would be true for other places if we were going other places. I think this is largely a result of her poor eyesight. On the other hand, I notice she is more distirbed or frightened by things she hadn’t expected. Noise is one of those. She seems to feel less and less comfortable in a world that seems stranger and stranger to her.

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Issues with In-Home Care

It was almost exactly two years ago that I first engaged sitters for Kate. Except for a handful of exceptions, the schedule has remained the same – four hours a day Monday, Wednesday, and Friday afternoon. We’ve been fortunate to have few changes among the sitters themselves. One of them has been with us the entire time except for the first week or two. That has been especially helpful since, until recently, she came two afternoons a week. We’ve had three or four sitters for Monday, but two of them were with us less than a month. I believe the continuity has been beneficial for Kate.

The past few months have been different. We lost our Monday sitter the first of June. Fortunately, the person who replaced her was a woman who had been with us forty weeks during our first year and quit to take care of her own health issues. I was glad to have her back.

Then our Wednesday/Friday sitter gave up her Wednesdays. She has been in great demand by the agency. That has been especially true during the pandemic. She was moving into a new house with her mother. She needed a break, and I understood. It turned out the Monday sitter was able to take the Wednesday slot. That has worked well.

After that, I had my own mini-crisis with respect to my blood pressure that was no doubt related to the increasing stress of caring for Kate. That led me to make a few changes. One of those was to add a sitter for Thursday. At first, it looked like that might be a problem. When I talked with the agency, I learned that they have been impacted by the pandemic. They don’t have as many people who are willing to accept assignments, and it is more difficult to recruit new ones. As it turned out, they were to arrange for our Monday/Wednesday sitter to add Thursday as well.

Over the weekend, the agency called to say that she had injured her back and would not be able to come on Monday. They called back that morning and told me they could not locate anyone else who could. Unfortunately, that was my day for Rotary, so I missed that.

It was also a day when I had a 2:00 appointment with my ophthalmologist. That meant I would have to take Kate or find someone else to stay with her. At first, I thought I might take her with me. I have done that on other occasions; however, she is bothered by wearing a mask. It is a challenge for me to get her to wear one from our car to a restaurant. Knowing that we might be there over an hour, I preferred to leave her home.

That prompted me to call someone we had met through our music nights at Casa Bella. Last fall, she started a business providing services to seniors. I know someone who uses her as a driver, but she does a wide variety of other things. I put in a call to her. She was available and came to my rescue.

I know that Kate didn’t remember her, but she must have seemed familiar. We sat together many times over the past five years. At any rate, they got along well, and Kate didn’t object when I left. She was resting when I got home two hours later, but according to my friend, things had gone well. I am glad I called her. She is an appealing person in whom I have confidence. If I encounter another situation like this, I won’t hesitate to call her.

The question now is “Will the sitter who injured her back be able to return soon?” I have no idea nor does the agency. Yesterday afternoon, I received another call from the agency saying they had been unable to locate anyone for today or tomorrow and are working on a replacement for next Monday. In the meantime, I placed a call to my friend who is available if the agency is unsuccessful. I have a dental appointment a week from today and told the agency about it. I plan to call my friend today to see if she could be a backup for that day as well.

Suddenly, my rather stable in-home care arrangement is no longer stable.

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Feeling Needy and Appreciative

I am sure I am not alone among caregivers in wondering how Kate perceives her own situation. I make my own interpretations based on what she says and does, but I would really like to know what she thinks and knows. One thing I do know is that she recognizes that something is wrong with her, and it often bothers her. As on other occasions, she made that very clear yesterday.

It was a day when she appeared unusually needy. All day long, she seemed to want to be with me, holding my hand and asking me what she should do about everything. It is not unusual for her to be dependent. It was simply a day of her feeling especially needy. Except for being uneasy when walking, she didn’t appear to be particularly disturbed. Even when I left her with the sitter, she seemed to accept my departure although she was disappointed and said, “Don’t stay too long.”

At dinner, she expressed her appreciation of my care for her. We were holding hands across the table. She said, “I can’t live without you.” With a concerned look on her face, she said, “I don’t know how I would get along if something happened to you.” It was a moment when I believe our thoughts were in sync. It was one of our tender moments when we convey as much or more to each other through our non-verbal expressions as the words themselves. That isn’t everything I would like to know from her, but it is very powerful. It reinforces my commitment to give her the best care I can.

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An Active Day With a Few Surprises

Kate continues to bounce from “knowing” me to “not knowing” me. Saturday she got up late. She didn’t know me and was suspicious of me. Sunday she recognized me immediately as her husband. Yesterday she was awake early (about 7:00) and didn’t recognize me. This time, however, she seemed perfectly comfortable with me as though we were very well-acquainted.

She asked my name several times including once at breakfast. Then she asked if I were married. Before answering, I asked if she were married. She said she wasn’t. I said, “I’m not either.” I asked if she wanted to be married. She shrugged and said, “Maybe sometime.”

After breakfast, we went to the family room where I planned for us to look at one of her family photo books, but she was tired and rested for close to an hour. Then she asked what she could do. I suggested that we look at one of her photo books. She responded very differently. She seemed a little uncertain about me and expressed hardly any interest in the photo book. We completed it, but she was never engaged. It seemed like she was irritated with me, but I couldn’t think of anything I might have done to cause it. I suspect her brain had made some critical changes while she rested. She didn’t want to look at anything else and wanted to rest again. I took her to her recliner where she rested again.

I’ve served on only one church committee during the past 3-4 years. It’s the one that calls members on their birthdays. While she rested, I made my birthday calls.  When I finished, she gave me a big smile and said, “You did that well.” She was in a completely different mood.

The sitter came at noon. She and Kate were just about to eat lunch when I left for Rotary. Kate was happy and didn’t show the slightest concern about my leaving.

When I returned about 3:45, I saw the two of them standing in the family room near the door to the kitchen where Kate appeared to be looking at her ceramic cat. I quickly discovered she was rather hyper though not agitated. The sitter said she had been walking all around the house and had been doing so for quite a while before I arrived.

This has happened a couple of times before when I have been with her. She walks around looking at everything with great interest. I continued to walk with her after the sitter left. I gave her my typical commentary. We spent at least another forty-five minutes looking around the entire house before taking a seat in the family room. She wasn’t tired, and we looked at her “Big Sister” album. Nothing seemed to ring a bell with her, but she was quite interested. We spent another thirty minutes with it before going to dinner.

We went to a nearby Mexican restaurant. On the way and during the meal, she spent a lot of time thanking me for taking care of her. She was sincere, but the way she expressed her appreciation was consistent with the hyper behavior that began while the sitter was with her.

She did something else that she has done a couple of other times at restaurants including this one. She wanted me to take pictures. First, she wanted our server to take our picture. Later in the meal, she asked me to take a picture of her. She asked me to wait while she got ready and began to create a little “food art” with her meal. This was very much like something she had done at home recently.

She began by taking some of the food off her plate and carefully placing it on the table. She also moved her sunglasses, napkin, and drink to places she thought were aesthetically pleasing. When I thought she was through, she took almost all of the food and placed it back on her plate. As we left, she wanted one more picture of herself.

When we got home, I played the other half of Sound of Music that we had started a couple of nights ago. Although she was in bed, she was more engaged than I have seen her in a long time.

She was still awake when I got in bed. I moved close to her as I always do. I quickly found that she didn’t recognize me. She told me her husband would be home soon and asked me to move away from her. Despite that, she seemed rather comfortable with my being there, just not that close. Not a typical way to end our day.

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“Knowing” and “Not Knowing” Me Experiences

I’ve found caregivers as well as friends attribute a special significance to those moments when our loved ones fail to remember us. The first time it occurs is especially noteworthy. I remember the first time my mom told me she didn’t have any family. I said, “What about your sons?” She said, “I don’t have any sons.” Looking back it may have been my first wake-up call as to how far along her dementia had progressed.

Surprisingly, I don’t recall exactly when I experienced that same moment with Kate. I know it was two or three years ago. I do recall that it was also a moment that signaled a new stage in the progression of her Alzheimer’s. There was certainly a touch of sadness, but not as much as one might guess. It was something I knew to expect. I just didn’t know exactly when it would happen. I also knew that because she didn’t know me at that time didn’t mean she wouldn’t know me at other times.

Since that moment, there has been a lot of variability in her knowing my name and our relationship. Sometimes she does; sometimes she doesn’t. I don’t test her, but I can often tell when she doesn’t. During the past year or so, she hasn’t known me by name or relationship most of the time. That is different now. It is not unusual for her to call me by name, but it usually occurs spontaneously, especially when she needs something. When she is talking to one of our sitters or the woman who cuts her hair, she often refers to me as “My Boy” or “My Guy” as well as “My Husband.” Sometimes she doesn’t recognize me, and asks me where I am using those same expressions.

As I have noted many times before, she almost always recognizes me as someone who is familiar to her and whom she trusts. That has been changing during the past few weeks or months. Yesterday was one of those days. Between 11:00 and 2:30 when I was finally able to get her out of bed, she didn’t know me at all. I believe that is why it took me so long to get her up. She didn’t recognize my face or my name. She didn’t look frightened, but she was suspicious of me. I should add that she didn’t know her own name. That, too, is very common. There is no way to be sure, but I think that most of the times when she doesn’t know my name she doesn’t know her own as well. It’s as though a switch has turned off in her brain and blocked all the signals for the people she has known best. That includes all of her family members including her parents.

After getting her up, she was perfectly comfortable letting me help her with toileting, showering, and getting dressed. Once out of the shower, she seemed to be less confused although tired. I got her dressed. Then she wanted to lie down on the bed. She rested about ten minutes. The rest of the day went well. I don’t know if she knew her name, or mine, or our relationship, but she responded to me as though she did.

When I got in bed last night, she said, “Who are you?” I gave her my name. She didn’t recognize it. Then she said, “Who am I?” I told her and said that we had met in college and been together since then. She didn’t challenge me. I said, “I’ve always liked you. In fact, I love you.” She held my hand and said, “Me, too.” I doubt that she knew my name or our relationship, but it was a nice way to end the day.

Addendum at 2:00 p.m.

Follow up to my earlier post

I heard Kate say, “Hey” just before 11:00 this morning. When I got to her bedside, she was about to sit up. I said, “I’m glad to see you, and I love that smile. You are very special to me.” She said, “I guess that’s how we’ve stayed married so long.”

I was surprised as this is a time when she is most likely to be confused and not remember me. Even on mornings when she responds to me as though she knows me, I don’t recall her ever saying something that so clearly indicates she knows our relationship. It was a very pleasant surprise. It was also a good indication of how she would feel getting ready for as well as going to and from lunch. She closed her eyes on the way home and is now resting on the sofa.

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A Day of Sleep

Saturday was a day that Kate slept/rested until almost 3:30. It was in the early spring of this year that she first stayed in bed so late. Since then, there have been 3-4 other days like that. She didn’t get out of bed until 5:15 one of those days. In addition, there have 5-10 days in which I thought she wasn’t going to get up, but I was successful in coaxing her.

On some of those occasions, she was scared of something she couldn’t identify while she seemed all right the other times. She just didn’t want to get up. Saturday was like the latter. In fact, she surprised me. When I tried to get her up around 11:00, she was awake and greeted me warmly. I told her I was glad to see her and wanted to take her to lunch. She smiled. She told me that sounded nice.

The problem occurred when I told her I had her clothes out and would help her up. She said, “In a little bit.” That didn’t sound good. When she says that, she doesn’t usually follow through. I told her I would let her rest a little longer and came back in fifteen minutes. It was clearer that she wasn’t going to get up. I tried several times over the next hour and a half and then gave up.

Close to 3:30, I returned to try again. She was awake and in a good mood. I had no problem getting her up, showered, and dressed. I had already decided we would have an early dinner, so I didn’t get her lunch. I gave her some juice and blueberries. Then we enjoyed our time together looking at her photo books.

She hasn’t been as interested in the YouTube music videos, so I tried something different  after returning home from dinner. It was early enough that I decided to put on a DVD of Sound of Music. She has responded to movies for a long time, but I thought it was worth a chance, especially because of the music. She lay flat on the bed with her eyes closed most of the time. She didn’t appear to be watching or paying attention, but she remained awake until the end. At one point, I asked if she was still watching and was prepared to turn it off. She wanted to continue. She went to sleep without a problem after that.

She apparently got enough sleep. The next morning she was up before 7:00.

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Making Changes to Deal with Stress

Before starting this post, I remembered that I had dealt with this topic almost a year ago It was instructive to read them again. I found them to fit with my more recent ones involving my blood pressure and stress.

At that time, I noted that my stress was increasing but felt it was lighter than that of many other caregivers. (I continue to believe that.) Then I commented on several factors that might explain why I felt that way. In addition, I outlined what I was doing for stress control.  (If you care to read them, go to  the “Archives” to the right of this post. Select 2019 and then September and scroll to September 1 and 2, “Thinking about Stress.)

Stress is a bigger issue now, and there is every reason to believe that the source is not going to diminish. The recent experience with my blood pressure suggests it is time to make a few changes. My own awareness of the stress the day before taking any BP readings was a clear sign of a problem. Then my overreaction to the readings themselves suggests not only the stress but my OCD tendency in action. As they say, “It’s time to pivot.”

In my previous post and quite a few others I have mentioned my “caregiver’s toolbox” of ways to the problems I confront with Kate. Except in the two posts mentioned above, I’ve said little about the “toolbox” I use to help me with my own problems. Until now, I haven’t had to search for any new tools.

One of those is joining a caregiver support group. I have always intended to join and one in particular appealed to me. It is one of a variety of activities sponsored by a local Alzheimer’s Café. I have been out there twice in the past 2-3 years, once by myself and once with Kate. I have also had several phone conversations with their director and one or two others on the staff. I have received their monthly newsletter since my first phone contact with them.

Until now, I hadn’t participated for two reasons. The primary reason was that I didn’t feel the need. My stress was minimal and quite manageable. Because of my prior and current experiences with dementia and caregiving, I didn’t have a special need to get information about caregiving per se. I did need social contact but was getting that in a variety of other ways. The second reason is that the times of their support groups and men’s coffee group didn’t fit my personal schedule nor that of our sitters.

My recent blood pressure episode and covid made a difference. My stress is greater, and the activities at the café are now via Zoom. That means I can connect right here at home. To be sure, it is not like being together physically, but it is a start.

One of the first things I did after meeting with my doctor about my blood pressure was to join the men’s coffee club. They meet in the morning the second and fourth Friday of each month. I met with them right away and will do so again next week. There were about eight of us. One other person also attended for the first time.

We had a good conversation. It is somewhat like a support group in that there were periodic references to dementia, caregiving, and our personal situations. That was particularly true in our introductions. Most of those attending were in the caregiving role now although one or two had already lost their spouses to dementia. The rest of the meeting was just a time to chat. The group has a leader who attempts to see that no one dominates.

On the whole, I enjoyed the people and will definitely be back next week unless it is one of those mornings when Kate is up early. That is likely to occur once in a while. Next Thursday I will have my first meeting with the support group. If it meets my expectations, I will continue it.

That leads me to another important step I’ve taken. I talked with the agency that provides our in-home care about adding another 4-hour shift on Thursday. That is up from the three afternoons a week we have had the past three years. We began this past Thursday, but the agency is short-handed because of covid; therefore, they don’t yet have anyone who can come regularly on that day. They are working on it and have arranged for the same person who came this week to come next week as well.

Joining the men’s group and support group as well as adding more in-home care is something that people often suggest to caregivers, but there is something else that has been at least as important for me if not more important. That involves how I manage my time. I’m making changes in that area as well. That will require a little more explanation. I’ll do that in another post.